• G.I.S.T Tumor Some growth was found on a portion of the tumor and it's pushing on my bowel. My oncologisgt wants me to see a surgeon since he hopes that this poetion can be cut out and I can continue taking 'gleevec as my treatment. Hasd anyone had A s

    Asked by ironmikey on Thursday, May 9, 2019

    G.I.S.T Tumor Some growth was found on a portion of the tumor and it's pushing on my bowel. My oncologisgt wants me to see a surgeon since he hopes that this poetion can be cut out and I can continue taking 'gleevec as my treatment. Hasd anyone had A s

    15 Answers from the Community

    15 answers
    • ironmikey's Avatar
      ironmikey

      Has anyone had a similar experience? I'm very worried about the possibility of surgery and concerned that they said it might be an option since before this point; surgery was out of the question. witch makes me think it may be more serious than they are saying.. I'm just really stressed out and could use some input... Thanks, Michael

      2 months ago
    • carm's Avatar
      carm

      Hello @ironmikey,
      I'm an oncology nurse and I would be more worried if a doctor told me that surgery is NOT an option...that it is inoperable. I do see this a lot with GIST malignancies and everyone does pretty good with the surgery. Debunking is a very common cancer treatment option. I'm sure you will do fine. Don't stress out. It is just pressing against the bowel but has not invaded it...thats the right time for this surgery. I understand the worry but I have been an oncology nurse for a long time and this is not that unusual and in no way does it mean that anything is even close to hopeless. I hope this eases your worries.

      2 months ago
    • ironmikey's Avatar
      ironmikey

      thanks nfor your response.. Untill the surgeon checks it out he didn;t say that the surgurey was a definite option though.. I hope it is.... he did say that some bowel woulod be removed if that tells you anything. Let me know... Thanks soo much for the quick response :)
      Michael

      2 months ago
    • ironmikey's Avatar
      ironmikey

      Hey Carm,
      what did you mean by "debunking"?

      2 months ago
    • ironmikey's Avatar
      ironmikey

      Oh you meant "Debulking" I got it now!!!!

      2 months ago
    • carm's Avatar
      carm

      Yes... XXX auto correct! I have a cousin in her late 40s who had all but 10" of her colon removed and does just fine...no ostomy either. It's common if you do get some colon removed that you might get a temporary ostomy until the colon heals and then usually it's reversed. Best of luck to you.

      2 months ago
    • GregP_WN's Avatar
      GregP_WN

      In my 32 years of dealing with doctors about all of my diagnoses, I have never had a doctor to not tell me like it is. I doubt that they are holding out on you with any information, but they won't tell you something like if they can or can't do a procedure or treatment until they are sure. Our best to you as you work your way through this.

      2 months ago
    • Russ' Avatar
      Russ

      Hello ironmikey, and welcome to WhatNext, a great website where you can find others who are on the same cancer journey as yourself. 19 years ago I had pancreatic cancer and had 40% of my pancreas removed, along with my entire spleen, a slice of my kidney, and 5 lymph nodes. I survived 19 years but it has returned in the form of a cancerous ulcer. Surgery certainly was an option. They removed 25% of my stomach and a good portion of my small intestine which was then rerouted back into my stomach at a different location. Surgery was performed on March 27th and I am doing fine, and have a cat scan scheduled Monday, May 13th to be certain that everything is doing okay. I will let everyone know how it turns out. My best to you and all of those on WhatNext...Russ

      2 months ago
    • ironmikey's Avatar
      ironmikey

      THANKS EVERY ONE.... Yea Greg P I have to wait for the surgeons Opinion 1in realize that, I'ts just the first time I've erver needed a surgery... Good luck Russ!
      you guys are gteat it really does help me feel a little easier
      Best Wishes, Michael

      2 months ago
    • ironmikey's Avatar
      ironmikey

      I'm looking for some new friends for support and to possibly talk too. Like most of us I'm sure; I have alot to deal with and I'm having a very difficult time adjusting and being able to focus on my daily life. My G.I.S.T, diagnosis was stage four when I got it this past August... My tumor was discovered during a visit to the emergency room on my past birthday 8/21/2018. So far everyone has been quite helpful and I hope to meet some new people Thanks, Michael

      2 months ago
    • ironmikey's Avatar
      ironmikey

      not sure where I should have posted that last one if someone might let me know Thanks again :)

      2 months ago
    • carm's Avatar
      carm

      Michael,
      We are all here for you. There is an old African proverb, " If you want to go fast, go alone. But... If you want to go far, go together. " So... Together we will go and you have the strength and support of many here. Lean on us.

      2 months ago
    • Molly72's Avatar
      Molly72

      I had a GIST tumor in my stomach about 7, maybe 8 years ago. Had surgery (by a mean surgeon and in a lousy hospital!!) & I am still here. No chemo for it either.
      I have had more trouble with other medical problems, including several other cancers, than I had with the GIST, so perhaps you can get through this rough spot.
      Good luck!

      2 months ago
    • BarbarainBham's Avatar
      BarbarainBham (Best Answer!)

      IronMikey, I was diagnosed with GIST and had stomach surgery in 2012-13. I did great regarding the surgery, but mine spread to my abdomen close to my liver before I started taking Gleevec. When I started taking Gleevec, it immediately shrank and so far is still controlled by the Gleevec.

      It's great if you can have surgery to remove it, but your next question could be whether your Gleevec dosage needs to be increased to keep it in control. There are several other drugs developed for GIST, but I was told that Gleevec is the most reliable.(statistically).

      When I was diagnosed, I read that GIST is so rare that patients should be sure they go to a large medical center that's seen it before, referring not only to the oncologists, but to the pathologists who diagnose it. You can always get a second opinion, but sometimes GIST grows very fast, so don't delay. (Your pathology reports note the mitotic rate.)

      Please let me know any specific questions I can help with. I noticed in your profile that you had applied for SS disability. If you don't have it yet, let them know you are Stage IV, and they will expedite it. My first check came in less than a month from when I applied. Of course, it's all dependent on your doctor's office faxing them the records documenting you are Stage IV. Wishing you the Best.

      2 months ago
    • ironmikey's Avatar
      ironmikey

      Hey Barbarian, I did get social security, Thanks. Ufortunately mine already has spread to my liver. I go to Fox Chase witch is pretty well known and my doctor has a good bit of G.I.S.T. experience so I'm told.

      they talked about changing the dose if surgery is'nt an option. They tried to do some sort of molecular testing but my biopsy didnt give suficient results so maybe I'll ask about a new biopsy. AS I mentioned earlier they all agreed that surgery wasnt possible untill this recent scan when they said that the one portion of the yumor is growing against my bowel so I'm meeting with the surgeon on may 23rd. I to Fox Chase Cancer center in Philadelphia by the way. hope to here from you again soon and I'll let you know how it goes when I see the surgeon... thanks Best Wishes

      2 months ago

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